Real Autism Awareness: What Autism Is NOT!

So, I’ve talked about what started me on this series and my experiences with my son. Now it’s time to talk about what Autism is NOT. The reason I bring this up is, as I said in my first article in this blog series, there are as many ways to be Autistic as there are Autistic people.

Aside from a profound lack of information on Autism in the public eye, there is a stereotype emblazoned in our minds by Hollywood as portrayed in television shows and on the big screen. If your kiddo doesn’t act like that, then Autism is quickly dismissed. That’s what I did. For 17 years, it never occurred to me that my son could be dealing with Autism. NEVER. In fact, we have family members who still don’t believe it because Chris doesn’t act like the typical Hollywood stereotype.

The Hollywood Autism Stereotype
Hollywood’s idea of Autism has always been limited to a five-year-old child who never looks anyone in the eye, doesn’t like to be touched, has no sense of humor, rocks back and forth, screams in public, and has no friends. This is NOT the only face of Autism.

Autism is a spectrum of many issues that come in varying degrees of severity. Some have a few of them. Others have more than a few. Some have the very same issues but on a completely different level of severity. I liken it to Fibro. Fibro is a collection of symptoms, but not everyone has the same ones nor do each have it to the same degree. My pain isn’t as high as some and fatigue is my most severe issue. Others have less fatigue but more pain and then there are all the other symptoms.

My son looks people in the eyes when he speaks, has a fabulous sense of humor, loves hugs, and is quite popular with serious minded people. On the other hand, he paces back and forth when he’s trying to focus or feel comfortable, has a hard time concentrating and focusing at times. As a child, he used to scream in public when he had too much stimuli, but he had been able to overcome most of that by the time he was a preteen.

Chris doesn’t give off Hollywood’s Autism stereotype. He, as most Autistic people do, has a unique set of skills and issues to work through. But there is one more major stereotype I’d like to address. Part of this has roots in the Hollywood image of Autism and part of it is a bit different.

Intelligence Autism Stereotype:
One of the reasons people don’t believe my son is on the spectrum is because he’s incredibly smart. I’ve never had his intelligence tested, but I’m fairly certain that a kid who taught himself to read at the age of three with the help of a computer program designed for third graders and was able, at nine, to beat adults at chess, is pretty smart.

The notion that Autistic people have to be unintelligent is plain wrong. The Autism spectrum includes an array of people all over the intelligence map. Some, like my son, are brilliant. Until recently when the Autism diagnosis was updated to include other forms of Autism, it would have been called Asperger’s. Because of the stereotypes and for clarity’s sake, I use the term Asperger’s or “On the Spectrum” when describing my son.

Now that you know what Autism isn’t…or rather what isn’t the ONLY description of Autism, I’ll be back next week to give you some things to look for that may indicate what Autism is in your child.

Please do me a favor and forward this blog post to all your social media accounts. I’d love some help getting the word out! I’m sure there are other moms out there desperately searching for answers as I was a few years ago.

Real Autism Awareness: My Experience

Last week, I shared why I felt it was important for me to talk about the topic of Autism. This week, I’d like to give you a little background as to why this topic is near and dear to my heart. It’s personal for me because my son is on the spectrum and because I was entirely clueless for the first 17 years of his life!

My inability to understand him caused him great frustration and I wish I had known earlier so that I could have helped him. When I told him that this topic was on my heart to write about, I asked him if he would be okay with me sharing a bit of his story. Not only did he agree, but he was quite insistent that I share details so that other moms would have more information. With that in mind, I pray this series will help other moms who may not have any idea that their child is dealing with this.

So, a little background:

My son, Chris, was always an incredibly bright boy. He taught himself to read by using Jump Start Third Grade on the computer when he was only three years old. He spent six hours a day on that computer standing up so he could reach the keyboard. I had told him that this computer game was too advanced for him and that I didn’t have time right now to answer all his questions. So, he figured it all out on his own.

One day, I came downstairs to find he had the English subtitles on the TV. Thinking he had messed it up, I “fixed” it only to find them on again later. This went on for about two weeks until I finally asked him if he was doing this on purpose. He said he was learning to read. A while later, I came downstairs to find the Spanish subtitles on. I never again told him he couldn’t do something because it was too advanced!

Chris was always impressing adults. He played chess with adults when he was about 9. Once, at a party, I had a series of moms seek me out to tell me how articulate he was on a variety of topics. He had mastered just about every hand held and computer game he got his hands on.

On the flip side, there were things that he did or didn’t do that had us scratching our heads. While he was able to hyper focus on the details of a game, he was completely unaware of a big truck headed right for him in a parking lot. He could recite Sponge Bob episodes word for word having only heard them ONCE, but he couldn’t remember to bring down the book I asked him to get from his room. He’d go up to his room, immediately see something that he wondered about and I’d find him up there playing with the carpet fibers.

At two, Chris hated the feel of grass on his feet, loud noises, long pants, buttons on his shirts, and would only eat one food for breakfast, lunch, and dinner…until that food was replaced by another food. At three or four, he stopped speaking for eight months resorting to grunts and pointing. I was just about to consult his doctor when I turned the corner and found him talking to himself and looking at me as if the jig was up! At five or six, I still had to sit beside him when he was eating to remind him to chew and swallow so he didn’t get distracted by the fly on the wall and choke when he took a breath to ask me how it could stick on the wall like that. At about 10 or 12, he had no idea how to answer certain questions that seemed to be fairly obvious.

“What grade are you in?” was met with a long blank stare. Later, we found out it was because he had no idea how that was meant. The grade he was supposed to be in if he were in public school? The grade assigned to most of his homeschool courses? The grade of his highest course? He was in higher math and science courses in junior high.

While his oral communication skills were quite advanced, he wrote essays as if he were a first grader. His handwriting was awful. This didn’t seem consistent with other things I knew about him so I had a thought. I asked him to type his essay over. Same topic. Same prompt. Night and day difference! Not only was his sentence structure and grammar better, but his thoughts flowed and it was quite a persuasive essay! More on this at a later time.

By the time Chris was 17, we realized he was having trouble in two of his courses. At the time, I didn’t understand why he didn’t just tell me he was having trouble. I didn’t understand how to help him. He could memorize a ton of information, but couldn’t figure out how to organize his notes or focus or be able to pick out which items where important to study and which parts of the book were less likely to be on the test. Also he couldn’t manage to focus if the test was much longer than an hour.

This time my internet search found much more than just Sensory Integration Dysfunction. I began to suspect that he might have Autism. That lead me on a race against time to try to find someone, anyone, who would take on a child of 17! Most therapists took kids from four to about 12. I must have called every number I found in a tri state area who might help until I finally found someone who got him to a doctor who finally diagnosed him with what most people would know as Asberger’s.

The reason it was a race against time was that I was told that in order to qualify for accommodations for the SATs and at a university, he had to be diagnosed by the time he was 18. It usually takes 1.5 years to get in to a doctor who could do the diagnosis, but we were rushed through and he ended up being diagnosed just a few days shy of his 18th birthday.

This is, of course, not his whole story. I just wanted to give you some background so you know where I’m coming from. Had I known that he was on the spectrum when he was young, he wouldn’t have spent all those years finding work-arounds for his focusing and organizational issues where he blamed himself and thought it was all his fault. If I had only known earlier, I could have saved him the frustration of trying to figure out what people meant by the seemingly easy questions he was asked instead of feeling alone, like nobody understood him.

I’ll share some more about him in later posts, but for now, I’d like to say how incredible my son is that he was able to figure out how to do so well for so long with such struggles only he knew about at the time.

If you have a child you are desperately trying to figure out, please stay tuned to this blog for more on Autism. And please forward this blog post to all your social media accounts. I’d love some help getting the word out!

Real Autism Awareness: Why I’m Sharing

There are some Facebook “awareness” posts that have bothered me for quite some time. First there was the one that had women posting a color: “Red” or “Pink.” Then, when friends would ask what that meant, they’d get a private message that said something like, “Aha! You should never have commented on my post! Now you have to post the color of your bra. Don’t tell anyone what it means. This is for Breast Cancer Awareness. Don’t spoil the fun!” Another more recent one was for Autism Awareness. This one just said, “There was a squirrel in my car!”

I never did understand how this promoted awareness if nobody knows what it means unless they comment. First, there probably isn’t a person on Facebook that has never heard of breast cancer or Autism. What they aren’t aware of, and what these posts never share, are any details of what to look for.

Since my son is on the spectrum and I would have been exceedingly grateful for any details when he was a boy, the next four posts will be devoted to what I call Real Autism Awareness and what my son says is Shock and Awe-tism because many of the things you’ll learn this month will be quite new to most of you. Autism is misunderstood by most and if I had been made aware of these things, my son wouldn’t have spent so many years frustrated and blaming himself.

Before I get started, I’d like to share a couple disclaimers:
1. I am by no means an expert in Autism. I’m just a mom who has some better insights into her own son and wants to help other moms with their children if at all possible.

2. Despite some of the comments I’ve gotten, my intention is not to “spoil the fun” and I do understand that most people posted these things thinking they wanted to help. I would just like to bring some real help…real awareness to those who need it because there is so little out there.

With all that being established, I’d like to give you the first and most important thing you’ll learn about Autism: There are as many ways to be Autistic as there are Autistic people! Autism isn’t just what Hollywood shows you in movies and TV shows. Autism is a spectrum of issues. Some Autistic people have some. Some have others. Some have a few. Some have many. Some have one that is a huge issue. Others may have that as a minor issue. Some Autistic kids will display certain things that make you think they are different and some, like my son, don’t and you’d never know it to look at them. But they struggle anyway and I’d like to help!

So stay tuned to my blog for three more important Real Autism Awareness posts. I hope you’ll share them all over social media and with your friends who may have a child who is unique…like mine! Now, THAT’s Real Autism Awareness!

Life Beyond Surviving Update

Life has a way of twisting and changing, especially as you grow older and especially when you have chronic illness. These changes lead me to make the decision to return to posting here.

Change#1: I have been classified as Medically Frail.
The way some people collect stamps, I collect diagnoses. My latest ones are Essential Tremors (ET) and Esophageal Dysmotility. So, I shake, rattle, and have a hard time controlling my throat muscles when I need to swallow…at times.

Change#2: There’s been a computer substitution.
The two things that affect me the most right now are Fibro and ET. But it turns out having your fingers shake makes it a bit difficult to use an iPad and that’s how I was able to get online ever since my computer decided to retire. We had to get our son a new laptop to be able to continue to do well in the Film Department at Purdue so I have inherited his old laptop. So, this and future blog posts are brought to you by RAMbus Maximus. RAMbus Minimus, my iPad, is taking a much needed vacation.

Change#3: The Facebook Shuffle.
For almost ten years, I’ve been growing a fan page over on Facebook I named after my blog, For the Love of Purple. When I transitioned to my new laptop, Facebook decided I needed to prove I was me in order to continue to have a voice to over 9100 Facebook fans. Unfortunately, Facebook wouldn’t send me the codes they want me to input and I tried so many times, it has locked me out until such time as Facebook decides I am worthy. I’m afraid my research indicates that it will probably never find me worthy and come June 3rd or thereafter, I will no longer be allowed to post as Admin.

Change#4: I feel God leading me in this direction.
After each of these changes, I have felt more strongly about sharing information, support, inspiration, and humor to uplift those who struggle with chronic illness and conditions. In fact, something that was being posted on Facebook prompted me to want to include Autism in that mix as my son has struggled with his Autism and I find very few people really understand it. To that end, I’ll be starting off this month with a short four part series on what Autism is and what it isn’t. I pray that this short series will help other moms who, like me, had no idea the struggles their child faces might be Autism.

I have a heart to help others who feel alone, struggle with conditions they don’t fully understand, or just feel like they need a place to be uplifted. I’d appreciate your help. If you find my posts helpful, would do me the honor of sharing the blog posts with others who need some inspiration, comfort, and love? Thank you!!

I’m taking a blog hiatus

Just a quick note to let you know that I’ll be taking some time off from my blogs and newsletter for the next several months while I concentrate on my health and a project my husband and I are working on together.

I recently added a few new diagnoses to the growing list. Last year I was diagnosed with Essential Tremors and just recently with an esophageal issue. It’s going to take me some time to find some treatments that can help, especially since my fibro has kicked up another notch.

When I’m down, I look up to my Creator

About a month ago, my husband was working a ten-day streak at a temp job 82 miles from home. Our son was visiting and it was Sunday morning. We only have one key for the car I drive and though my husband left the car for us, he forgot to leave the key so, we weren’t able to go to church or to the store to buy groceries.  It was my last day with our son before he had to go back to college and I was in more pain and fatigue than usual due to a Fibro flare.

Sitting at my computer working for my clients’ social media accounts, I “penned” the following because it suddenly occurred to me that the things I was praying ABOUT were the very things I was praying FOR not too long before.  It received so many responses from people who said they needed to hear it that I decided to share it here so folks could always find it if they needed it.

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When I am worried about my husband having to drive 82 miles one way to work, working ten days straight, leaving at 5:30 am and not getting home til 9 pm, I am reminded of when I prayed to the Lord because he was out of work for months.

When I am sad that my son is leaving again to go back to college, I remember how I prayed that God would keep him safe in utero and how the Lord performed several miracles during his birth.

When I’m lonely because my daughter lives in another state, I think back on the time when the Lord healed her completely after a virus had caused an enlarged heart valve.

When I’m frustrated with how tired I am and the pain I feel, I’m reminded that my God had given my surgeon the idea to take out my fallopian tube during a routine surgery for a simple cyst and found cancer in its infancy that is almost always found too late.

When I’m down, I look up to my Creator and marvel at His blessings for me.

Do you hurt when you travel? I have an idea!

I’m taking a break from the monthly video series to bring you this Fibro Travel Tip.  You see, over the Christmas holiday, I had to travel to my Sister-in-Law’s house to visit my Mother-in-Law who is 93.  She used to travel to us, but she can no longer handle the plane trip and being in a home that isn’t suited to an elderly woman who needs help with showers and such.

While it was a lovely time being with my husband’s family and getting caught up with their lives, it took quite a toll on my body.  Here’s why:

To get to the airport, I first had to travel a half hour by car with a stiff ride on Indiapotholedled streets.  Next, I had to wait in line to drop off the baggage and then in the TSA line. The plane seemed exceptionally tight, even to my husband and son. I’m only 5′ tall and it was so cramped on the plane that even I couldn’t cross my legs!

After the 5-hour plane flight, unable to change positions, I found myself just about crying almost to the point of being sick from the pain.  Head in hand, I tried, unsuccessfully, to alleviate my neck pain which had traveled into my arm, back, jaw, and my left eye.

Arriving at the San Fransisco airport meant that I had to walk all over the airport. First was a stop to retrieve our luggage. Next, we had to take an elevator up, then walk a bit, then an elevator down, then walk some more, then take an airbus on a rail to another part of the airport where we could get to the rental car area.  I think we took all possible modes of transportation that day except a boat!

After getting the rental, we still had to travel three hours plus by car to get to Sacramento where my in-laws live.  So, by that time the only part of my body that didn’t ache was my left pinky toe!

On the trip back, I had a bizarre encounter with the SF TSA.  You can read that hilarious story by clicking here.  Just before getting on the plane, my back was killing me so I took some ibuprofen.  And just like that, I wasn’t in nearly the pain I had been on the trip out!

I will NEVER again fly without first taking some ibuprofen!  Even if I still have more pain, at least it will be MUCH less! In fact, I’m going to be doing this even on our 1.5-hour car rides to and from my son’s college.

If you think this might work for you, I’m glad to have been of service!

Insomnia FUN

So as many of you know, I have had insomnia daily for over 19 years – even on meds. The other night was especially difficult and when I had some coffee in me, I created these memes. Whatcha think?